Saturday, June 29, 2013

Well, anyone who knows me knows I am a chronically ill, strong Christian young adult woman. About 5 years ago, heck, about 2 summers ago (and all the days before that since I was about 14) I thought my sole purpose on Earth was to find Mr. Right. And I'm not talking Mr. Right like Ryan Gosling, John Mayer, Hugh Grant, etc. (Although, those are all nice choices) I'm talking like sits on the front porch and plays guitar, takes me to Sunday school and church, opens the car door for me, knows the Bible from memory and uses it to encourage me, makes a lot of money, has a nice house in the woods, etc. Mr. Right. Like the perfect man ever (for me).Often times we struggle with choosing a man and thinking that he should be to the same level of perfection as God because that is the most perfect relationship we know and then we break up with them because that is never gonna happen because no one is as perfect as God. Because God is the only perfect being in the universe. These are 2 things that Christian women are constantly reminded of in the dating world to help them not get their hopes up or be crushed when they realize they do not live up to the insanely high, unattainable standards they have set out for dating because no one can be as good as God. 1) Expect a human being, not someone perfect. No one is going to be everything you have ever dreamed of. Give the guy a break. You already know that you are not Ms. Perfect. He will make mistakes too. Relax a little and don’t be too picky. Allow for human frailty. Look beyond physical attractiveness. You don’t want a slob any more than he does, but he doesn't have to be Mr. Hunk either.2) Be patient. Rome was not built in a day. It may take some time to discover what appeals to you and why. You may make a few friends, and even break a heart or two. You may get hurt. Keep at it. There are good men out there. You simply need to know where to look.These are very important things to remember and very truthful things to remember. But the last 2 years of my life and ever more increasingly, I have had to apply the same two thoughts to a completely separate set of people that I thought I would never have to at least not this early in life. Doctors. Yes, I am equating finding Mr. Right, the most intimate relationship a girl can have, her husband, to doctors. Because what is a chronically ill gal supposed to do to illustrate a situation? Ya know why? Because I spend way more time with doctors of all kinds than I ever will with one human being. And because it's an intimate relationship. And because I just want someone to listen to me. And doesn't everyone who has a chronic illness secretly long for their very own personal Dr. House? You search and search and search for a new specialist and read all their publications, read reviews from their other patients, look at the school they went to, and think they are just gonna be perfect for you. You meet them the first time and you even like them then. You put all your hope that your 10 year long journey of sickness and searching for answers is going to end at the next appointment. You get so hopeful, you just know the end is in sight. You know you have found Dr. Perferct. And you end up all like this:

(please notice the pun)

Then you meet them a second time (or third, fourth, fifth, etc) and find out that they are out of ideas and frustrated and don't want to help you anymore. They've never heard of dysautonomia. They don't know how to read your lab results. They don't understand how sensitive you are to different meds and coming off of them. They don't understand that your body is different than a "normal person's" body because everything in your body that's automatic doesn't work. They string you along and act like they are helping you and they care about you so you'll keep coming back for more and changing your meds and making you feel like they are helping you out, but then you realize they really have no idea what they are doing. Then they have no choice when you are really, really sick but to save your life, because they have been screwing up for so long in the first place that you completely shut down every where and it isn't good. Then you figure out that what you've ended up with is this:

This is when it comes in handy to remind yourself that even doctors get frustrated in this process and remind yourself of the 2 thoughts above but in a little different wording.

1) Expect a human being, not someone perfect. No one is going to be everything you have ever dreamed of. Give the doctor a break. You already know that you are a frustrating case. He will make mistakes too. Relax a little and don’t be too picky. Allow for human frailty. Look beyond the appearance of apathy, maybe the doctor is trying his hardest and just hasn't come up with the suggestion yet. Give leeway for forgiveness. Use the nurses to your advantage :)2) Be patient. Rome was not built in a day. It may take some time to discover what treatments will work for you and why. You may meet some awesome people, and you may meet some not so nice people. You may get hurt and let down. Keep at it. There are good doctors out there. You simply need to know where to look.See, look, you didn't think I could apply the thoughts behind finding a Godly husband to finding a perfect doctor. But it's true. If we are going to spend this much time with someone it has to be a good relationship. It takes time, it takes effort. I still don't have a Dr. Perfect...but I'm looking (and I'm really close in several areas)...and I hope he looks a lot like Dr. House, because he ain't bad looking either ;)All I have to say is it has been a LONG, FRUSTRATING week and I'm ready to go to sleep, in my own bed, and dream about better days where there is no sickness and Mr. Right is on my mind again instead of Dr. Perfect.

Wednesday, June 26, 2013

I went in because my BP was going from numbers like 165/127 hr 48 to 110/61 hr 120 in a matter of minutes and it was completely making me crazy and both of those were laying down in bed.

My blood pressure is much more stable, but still no where near amazing. Even after 6 liters of fluid in the hospital. So I'm still going to get my weekly 2 Liters at the infusion center tomorrow, it's the only way they would let me leave today. So I will get 8 Liters total this week! Holy Cow!

The Electrophysiologist they wanted me to see that they kept not releasing me because we were waiting on his consult is on vacation this whole week, so I would have been waiting a long freaking time if they didn't figure that out.

I would not leave until they made me walk with a pulse ox on so we could see if I was really stable enough to go home. My HR went up to 130 but stayed there the whole time and did not fluctuate, so we are considering that stable.

I am still getting VERY symptomatic when I eat so we now have the eating regular foods in a controlled setting documented and know we need to work on that further. All the docs are on board with the NG tube trial at this point...whoopee...not.

I am talking to rheumy tomorrow about not tapering the lyrica or any other med anymore because I obviously cannot handle it.

We have no idea why my migraines have suddenly appeared in full force after 3.5 years, but they are back with a vengeance.

To try to fix the migraines and the tremoring the neurologist that I thought I hated and turns out to be super awesome started me on Topamax yesterday (a very small dose) and within 2 hours my hand completely stopped tremoring for the first time in 3 years and hasn't started again since. The migraines are still extremely painful, but she said it was gonna take a while for it to work and probably wouldn't work until we tapered me up to a higher dose, but we are being very careful adding this med in due to my sensitivity with meds.

Due to the fact that I obviously need a lot of fluids since I just had 2 liters Thursday, 6 liters Monday-Wednesday and am getting 2 more tomorrow my GP is calling the cardio about making my fluids more often and getting a port very soon.

The endocrinologist seems nice, but obviously doesn't know adrenals very well because he said my second stim test was normal (despite my BP dropping to 84/51 and heart rate of 47 last night) and when asked about why I'm reacting if it's normal he told me because some people don't like to be stressed. However, when I got my printed out labs upon discharge my baseline was 18.8 and my 60 minute was 24.1. Which means it only rose 5.3 points the whole test and it's supposed to at least double if not triple if you are responding correctly which means it should have at least been 36.4. However since my baseline was "within normal limits" it didn't flag as abnormal and he called it normal. It obviously isn't normal. My adrenals are obviously not working. I will be looking for an endo that realizes this soon. ;)

I got copies of all my labs and all my vitals the whole stay to bring with me to my new cardiologist appointment next week :)

I am overall still feeling really lousy but happy to be in my bed with my puppy.

Sunday, June 23, 2013

Being chronically ill is a constant balance between good days and bad days, happy days and sad days, rejoice and sorrow.

It's also a constant balance between knowing when to talk about being sick, and when to not talk about being sick.

When to think a new symptom is something bad, when to ignore a new symptom.

Well, let's just say there is a lot of balance that goes into being chronically ill, and it's not an easy game I tell you.

It's so hard to maintain your health, advocate for yourself to your doctors and peers, yet not get so into symptoms and charting that you become obsessive over your health.

Lately, I've been having an extremely hard time finding an appropriate balance in my life. I don't know if it's because I've been progressively getting worse or if it's because I have free time and have been focusing on the pain and symptoms because I have nothing else to do.

All I know is lately my life looks like this all the time:

This is an especially ironic photo since dysautonomia is a bad relationship between the brain and heart balancing each other out. It always feels like we are walking on a tight rope balancing every symptom without any help.

Anyways, I've been trying to get off my meds because at this point we aren't sure if they are being helpful and they might even be hurting me. But I can tell you right now that they were helpful because I'm in such intense pain that it isn't even funny. I wake up every morning and I'm in so much pain I'm nauseous and almost can't do anything until I throw up. Then I'm dizzy all day and feel like I want to pass out, but never do, which usually helps because it kind of resets my body.

But I've also been studying a lot about pain, while working on my thesis. I found this quote the other day that talks about perception and changing the chemistry of your body.

I'm trying to go with this and trying to focus on the positive, but for some reason it's just making the symptoms be so much worse when they poke through.

I guess I'm gonna call all my docs again this week and see if we can figure out what is going on. We will see.

But I am going to make a conscious effort to leave as much health stuff off my Facebook as possible. So if you aren't in one of my support groups, this will be your health update space.

I need to separate some, and posting it on my Facebook page isn't healthy. So I'm stopping. Minus some random meme's and things like that. My Facebook will be chronic illness free. There will be happy things there. Most of the time.

Because I need to get better at this tight rope walking thing. To find a balance that is good for me and my health.

Friday, June 21, 2013

A couple of days ago I saw a really cool blog post on the diagnosis process (which is extremely long and frustrating) of dysautonomia. It was hilarious and made me laugh a lot. So I thought I would do one on the typical day of someone with a chronic illness for a little bit of education (for those that think all we sick people do all day is lay in bed and collect our disability checks) and a little bit of humor (for those of us that know that's not all we do all day).

Hope you enjoy reading it as much as I will enjoy writing it :)

So first your alarm goes off, or you wake up on your own and you have no idea what day it is, what time it is, or where you are, and you just kind of look around the room a bit and get your bearings.

Then you decide you want to try to stand up and go to the bathroom and you feel dizzy, and nauseous, the whole room is spinning, and you just know it's gonna be another one of those days.

You finally make it to the bathroom and get in the shower. You are already running low on spoons so you don't even have the energy to take your clothes off or stand up, so you do this:

Then you make your way to the 1st doctors office and get your IV fluids (which takes 4 hours by the way) and you "drink" it all up to the last drop:

Then you go to physical therapy and work oh so hard:

Then you have to go to another doctor to figure out why your head hurts so bad and they pretend to listen, then give you a shot in your bum:

Then you get told to go home and lay down and sleep it off, but you can't because you still feel sick and now your bum hurts so you channel surf:

Then you try to eat dinner, and you think you're hungry:

Then you find out you're really not and still nauseous:

Then you try to walk to your room, but pass out on the way because you just ate and eating makes you pass out:

You finally make it to the bathroom, lay on the floor, and make this face for a while:

Once you decide you are ok enough to get to bed you toss and turn for a while:

Then you realize you aren't ever going to sleep, and start this:

Then you finally doze off, for a couple of hours and are very happy:

This draining day doesn't include all the pain, dizziness, nauseousness, sweating, or racing heart that happens 24/7 and makes you feel like this:

and this:

but you manage to put a smile on, even though this is what you're saying in your head:

Because you know you have to do it all again tomorrow, because this is your life, and you better embrace it, and laugh at it, or else you will be sad all the time, and it's so much better to be happy, even if you do feel like crap. So put on your big girl panties and get ready to do it again tomorrow, because you are special, and you can do this. :)

Tuesday, June 18, 2013

Don't get me wrong I love the fact that I am getting weekly fluids. But when you get Saline on Thursday, then need Remicade on Tuesday, and know you are getting another infusion of Saline on Thursday...it's a lot.

I'm supposed to be working on my thesis. And that's not happening right now because I have all these thoughts running around in my head. So I'm blogging first so that I can have a clear head to work on my thesis.

So here are some of the things I'm speculating about here on "Spa Day"

1) Why do people judge people?
Like I know I do it too, I'm the first to admit that. But seriously, I have been judged so many times the past week for things I'm doing with my life the past week, it makes me want to vomit, and I have about it. I am not a mean person, I'm not evil, I don't have mean intentions usually. Plus, what I chose to do with my health journey is my business. Believe it or not, I am semi-educated and have some health knowledge...therefore, I can make my own decisions on what to do with my body.

2) On that note, just because I am going off all my meds does not mean I am all better now. It means that the meds aren't really taking care of the symptoms and just causing more side effects so I'm going off of them because I would rather live with the disease symptoms then the side effects of drugs that are floating around in my system making me sedated and loopy.

3) Why can't all the doctor's get along? I go to the neurologist and he says it's a heart problem, I go to the cardiologist he says it's a GI problem, I go to the GI he says it's a heart problem, I go back to the cardiologist he says it's an adrenal problem. Why can no one take responsibility for this and tackle it head on. The only one that is kind of trying to help is my rheumy and he admits he doesn't know enough and just tries to help me find good specialists. Although, my GI did step it up yesterday.

4) On the GI note, I'm a dietetics student. I know G-tubes, NG tubes, etc are not a first resort. You do not need to tell me that I need to try x,y, and z first to make sure before i go this route. I have been passing out or near passing out every single time I put any food in my mouth since November. That is 8 months of not being able to eat properly. I've lost 17 pounds because of it the past 3 months. I do not WANT a g-tube, I LOVE food! It's an option and a plan, we don't even know if it will work. Let me see if it does, let me make decisions regarding my healthcare.

5) Withdrawal stinks. I'm an emotional, over sensitive mess. I'm crying at most things and throwing up at others. I hope this goes away soon. But I doubt it will, since I'm on the lowest level right now.

And that is all for now. I'm tired and don't really wanna work on anything right now, but need to.

Thursday, June 6, 2013

I got the idea for this blog post about 3 or 4 days ago talking to my friend at most likely 1-2 in the morning (I know it was late, just don't remember when). This friend and I talk almost every night in the wee hours of the morning because I can't sleep because I have my disease, and she can't sleep because she has an 11 year old with my disease that she has to take care of. Well, a couple of days ago we were talking about people and things. I wanna say not in a mean way, but seriously it was, sort of.

Well, here is how it went a little bit. We were talking about how certain people with chronic illnesses (we weren't naming names, just personality types) are the type of people that can't forget they are sick. They post about it every 5 seconds, they complain about everything, the post pictures of their piles of pills, their blood pressure cuffs, etc., they are so draining, they are so annoying. Then there are the people that don't care either way and are so lackadaisical and they almost act like they are not even sick at all, like they have no pride in who they are. Then there are the people who post all the time about their illness, but it is for advocacy sake, and they are always striving to beat POTS/Fibro/whatever just one more day. We have drive, we have passion, we have tenacity (DISCLAIMER: NONE OF THESE PERSONALITIES ARE RIGHT OR WRONG, WE ARE ALL IMPORTANT!!)...well, we decided this was me...and then the conversation continued this way:

Me: "It (this personality type) gets me in trouble a lot too. People think because I do so much or try to accomplish so much that I'm not as sick as I am and they don't realize how incredibly tired this drive makes me."

Friend: "Yep, I can see that. Same with my daughter. I really got to put the brakes on her sometimes."

Me: "Example: those valences I just made...I made 3 for the small windows, people will see that on facebook and be like damn, she just made 3 valences she must be fine...they don't know I threw up from the pain afterwards."

Friend: "I know, they totally don't have a clue, she tries to be normal with friends and they have no idea it's killing her."

Me: "It's like they (normals) think we have to stop living because we are dying or chronically ill. Wake up, we're all dying, from the moment we're born, it doesn't stop the normals from living."

So why is it that we (chronically ill people) are expected to sit at home all day and not move at all and basically act like we are dead already and if we deviate from the plan at all, if we go out and have some fun, we aren't sick anymore. I didn't realize when I signed on to this set of illnesses at 24 that I was sentencing myself to a life of staying at home and watching Price is Right for the rest of my life.

I hate, hate, hate with a passion the comment, oh you did ______ you must be all better now, right?

The people that say that to me don't realize that the one thing I did, the one appearance I made, took all of my energy for that day. People don't realize that the doctor's visits, treatments, infusions, meds, etc. are my full time job.

People say, you're so lucky you get to stay at home all day. I can't remember a day when I "spent at home all day" Yesterday, a day where I had planned to spend at home all day, I had to go fight with the Medicaid office because they discontinued my health insurance since I didn't "send in my bank records" well, I did, just not the way they wanted them. For me to do this task I had to get up, get dressed, go to the car, get in the car, drive to the medicaid office, get out, talk to the people, get in the car, drive to the bank, get in the car, drive back to the medicaid office, get out of the car, go back in talk to them again, get back in the car, and drive home. By the time I got home...from my around 1.5 hour task...I was in so much pain and in so much emotional trauma that all I could do is curl up in a ball and cry, and try to sleep. This "one" simple task to a normal person took me upwards of 15-20 spoons...and I already had about negative 10 from the day before. But I needed health insurance, so I did it anyway. And then I for real had someone say to me in a private message, for real, it's so good you felt good enough to leave your house today, I was livid! If it were up to feelings I would never leave my bed again, but life isn't about feelings. Life is about putting on your big girl panties and moving on.

Anyways, I don't even remember what my point was when I started writing this blog post. Besides the fact that just because I can't do something, doesn't mean that I don't want to. I want to, so bad. I am always thinking about what I'm gonna do, but then realize it's not possible anymore. Last week, I realized I couldn't read the music fast enough to play it at the right tempo on the keyboard. This week I've had it in my head that I was gonna work on my thesis every day this week and then my brain never cooperates. Tomorrow I'm going for my 4 hour saline infusion. Monday, I'm asking my neurologist for a wheelchair so I can go to the grocery store. Seriously. I'm 27 and I am going to beg for a wheelchair so that I can go to the grocery store. I bet you dread going to the grocery store, don't you? I cannot stress to you guys enough how annoying it is to have the mentality of "go, go, go all the time" and wanting to be a normal 20 something year old (or younger) and being in reality the body of a seemingly geriatric (seriously the people in the nursing homes get around better than me). I really just wanna be able to do normal things, even if that means I do it differently than normal people.

I'm just gonna leave you with this one thought. Never, ever, ever wish your health away. One of my professors for adaptive PE (before I was sick) always told us we should never use the term able bodied person, we should use the term temporarily able bodied because we never know when we are going to not be able bodied again. Boy, ain't that the truth. At that point, I was sitting in class, literally saying in my head, yeah, but that will never be me. Well, surprise, it was. And it could be you too, tomorrow! Also remember "the things you take for granted, someone else is praying for."

Monday, June 3, 2013

Well, I haven't written in a couple of days because I've been travelling to doctor's and tired and busy. But I'm on day 3 of the 30 days of posts.

The prompt for day 3 was to write about a conversation with your doctor. First of all, I have like 12 of those, which one am I supposed to pick. Second, I really don't like calling out medical professionals on the idiocy completely in a public forum such as this. But I will today because I was prompted to :)

However, the quote I'm going to use for the premise of this post is from a doctor who I no longer see because he is in North Carolina and from one of two doctors who has never doubted me or had a negative thing to say about me. The other one may be quoted too later :)

Dr. Brown was my general physician in North Carolina and despite my countless, sometimes weekly, sometimes daily visits to his office, never called me a hypochondriac or told me I had anxiety or said I was a liar. He kept running tests trying to find out what the hell was wrong with me and it just never worked out. He was the one that put me in the hospital when my hemoglobin was so low it almost killed me and got me referred to run tests and found out I had colitis and celiac. Anyways, one time we were talking at one of our many visits and he told me, "ya know Megan, you are the hardest and easiest patient to treat all at the same time." This was a big compliment. Basically he was saying that I was the hardest because he had no idea what to do with me or what was causing me my issues, but I was the easiest because no matter what he put me through or what he told me I was easy going and very agreeable. It made me feel better about "wasting his time" as I thought I was doing because I knew at least he liked me and appreciated my willingness to be an agreeable patient.

Then somehow I ended up in Indiana. Where I don't have that wonderful man anymore. I do have a super rheumy, but it's still not the same as Dr. B, but I love him too :) But I also have a GP who could care less about anything, a chrio who thinks it's no big deal that my joints continuously pop out of place daily and doesn't think this should affect the way he should adjust me, a GI doctor who think it's no big deal that I haven't been able to tolerate more than one completely solid meal since November (yeah I haven't eaten more than one solid meal a day for 7 months, no big deal), a Cardiologist who thinks that I'm making up everything even though I bring in all my daily numbers every visit and didn't even come in my room the last time I drove 2 hours each way to see him--he stuck his head in my room and said he was referring me to endocrinology and he would see me in 6 months, when 2 weeks prior he changed my meds and added IV fluids and said that this appointment was to discuss if those changes were helping and neither were discussed at all (he is so FIRED!), a neurologist that could be ok--I've seen him once and he was ok the first time, but first impressions are not everything in health care. I've also fired 6 other doctors since I've been here and that doesn't include the cardio above that is not technically fired yet. I've had numerous ER visits where people looked at me like I had 3 heads because of course by the time I got there my symptoms were completely different. Being a patient with a chronic illness is ridiculously hard to keep up with and understand at at times. This month alone I have 9, possibly 10 or 11 if I can get in with GI and endocrinology this month appointments/treatments. That's out of 20 business days. That means that literally half the month I am at the doctor or getting a treatment. This is why I cant' work. Being chronically ill is exhausting and sometimes I don't think doctors realize how much of our precious time, how many spoons it takes to go to all of these appointments. How pissed I was the other day when I drove 4.5 hours round trip for a 3 minute appointment. Do you know how much energy that takes someone with a chronic illness? I don't think most typical people realize how much energy driving takes. It takes a lot.

Now let me go to the flip side. Remember I said I have a super rheumy? Let me tell ya about him. He is a lot like Dr. B, except he is running more tests than Dr. B did because he is a specialist. He is trying super hard to figure out why I feel this bad. One time he reminded me why sometimes I feel bad for doctors of patients with chronic illnesses. One time he called me, I was in class having a bad day and had called his line for a question. He called me back at 6:30 at night, himself, and I was still in class. I went out and sat in the hall to talk to him. He told me he wasn't sure what to tell me, we were doing everything we could. He could tell I was crying. He asked me what was wrong and I told him I was frustrated and then immediately said I'm not frustrated at you I'm just frustrated from dealing with this every day. He said "me too, I'm frustrated with your body, I wish we could figure out what was wrong with it." This made me realize that doctors (sometimes) can be compassionate and (sometimes) do care about us. Sometimes, they are human and don't know what to do. And sometimes they just want to tell us they are just as frustrated as we are. It must be hard to see patients day after day with chronic illnesses that they can't fix like people with colds and the flu, it must be hard to care so much for your patients because you see them so frequently and not know how to fix them. Sometimes it's nice to know they are frustrated too as long as they express it compassionately and not by not even taking the time to look at you and let you ask questions, even if they know they won't be able to answer them.

About Me

I am a young adult woman, who thought I had it all together, then realized I didn't. Which, I am fairly certain happens to all of us. However, it happened to me all very fast and in all aspects of my life. I lost my health, my job, and basically my whole life as I know it all within the span of a month. I am putting my life back together one piece at a time and hope to do it with peace. Hope you enjoy as I seek to keep my identity in Christ while putting my life back together into what He wants me to be! :)